The cold comfort of the Make-a-Wish Foundation

What my internship with the beloved non-profit taught me about its limitations.

The cold comfort of the Make-a-Wish Foundation

What my internship with the beloved non-profit taught me about its limitations.

After deciding to to take a break from college earlier this year, I took the advice of a close friend and began an internship at the Make-A-Wish Foundation, the American non-profit that grants experience-based “wishes” to children diagnosed with critical illnesses. I was optimistic about the organization based on my initial online research and my general understanding of their mission. Once I started, however, it wasn’t long before I began to question what I was doing.

During my time working with severely ill children, I struggled to accept their immense physical suffering, nearly always compounded by extenuating circumstances like poverty, absent parents, and insecure housing. Our intervention as a part of Make-A-Wish was usually welcomed by doctors, social workers, parents, and the child as a small relief from the day-to-day hardships of the child’s life.

At first, I was incredibly excited to help book flights, buy gifts, and arrange tours to fulfill these children’s wishes. As my caseload rapidly increased, however, I became uncomfortably conscious of how detached and robotic the wish process truly became when it was assigned within a corporate structure.

Moreover, I could not ignore the frequent occurrence of children who receive their magical wish experience and then return to the lingering medical bills, tremendous mental distress, and limited resources of their normal life. Yes, a temporary respite is often welcome, but that simply throws into relief all of the things from which these families need a temporary escape.

Though the organizations touts the profound impact of a wish, Make-A-Wish is a vast international operation with no intimate relationship to its thousands of constituents outside of the wish process, often greatly reducing its restorative effects. Furthermore, Make-A-Wish’s wishes are not focused on targeting the core problems and long-term wellness of families and children with severe illnesses. Because of this, the organization’s good intentions can seem patronizing, essentially constituting a consolation prize for a life constrained by illness.

And while it is incredibly difficult to accept the indiscriminate suffering that childhood illness causes, any capitalistic attempt to compensate for it will always fail. I believe there is a way to honor a child’s inherent value and essential needs without reducing their personhood — one that focuses on giving children and their family access to medical care, special education, and necessities that allow every child to thrive. Instead of granting children single experiences, it is possible to give them dignified lives.

The Make-A-Wish Foundation has become a treasured cultural institution that attempts to soften the shocking, inexplicable tragedy of childhood illness. At its best, the foundation’s mission is a caring attempt to create meaningful experiences for a child with a grave illness. But what it ultimately offers is inevitably lacking compensation for the suffering of the children it purports to help.

The “magic” of Make-A-Wish vanishes when you witness, as I did, the regulated, mechanized wish-granting process and its inability to reckon with the complexities of childhood illness. Make-A-Wish needs to be recognized for what it is: a misguided, but immensely satisfying coping mechanism for the general public.

Make-A-Wish was originally inspired by the life of Chris Greicius, a 7-year-old boy from Arizona with leukemia. Chris, who died in 1980, dreamt of helping to catch bad guys as a police officer. A family friend was a U.S. Customs agent and, with his help, Chris got to spend a special day in the company of the Arizona Department of Public Safety.

The power of Chris’s experience inspired DPS officers to create a wish-granting organization; once it was started, it quickly gained renown. A national chapter was established in 1983 and local chapters rapidly began to open throughout the United States.

Today, Make-A-Wish boasts an international network headquartered in Phoenix. It has granted more than 285,000 wishes; a new wish is granted every 34 minutes. According to its latest tax return, Make-A-Wish’s national chapter had a total revenue of more than $120 million in 2017, coming from “... individual contributions, corporate donations, foundation grants, planned gifts, and chapter fees.”

The national chapter reported 251 employees, as well as 32 independent contractors. In combination with the 62 local chapters in the U.S., Make-A-Wish generated a total revenue of over $360 million last year. Even after nearly 40 years of existence, the organization remains committed to its original mission, creating new programs to expand its outreach and testing online initiatives to digitize its wish process.

The “magic” of Make-A-Wish vanishes when you witness the regulated, mechanized wish-granting process and its inability to reckon with the complexities of childhood illness.

As an intern working in the wish-granting department, I frequently helped with the referral and eligibility process. A wish formally begins when a child is referred to their local chapter, typically by their parents, social worker, or doctor. A referral coordinator, responsible for monitoring all eligibilities, begins the process of gathering more information about the child and reaching out to their doctors.

Contrary to popular belief, Make-A-Wish does not only grant wishes to terminally ill children; its mission is to “…grant the wish of every child diagnosed with a critical illness.” They further clarify that a child should be suffering from “…a progressive, degenerative or malignant condition currently placing the child's life in jeopardy.” Unfortunately, this description encompasses a wide range of diseases and does not provide concrete, measurable standards to the public.

For doctors, Make-A-Wish currently provides limited eligibility guidelines based on specialization, though they can be vague and contradictory. A child with an eligible disease may not qualify if the condition has not progressed enough or the symptoms do not align exactly with the guidelines.

For example, a child that has been diagnosed with Tetralogy of Fallot, a rare heart defect, also has to suffer from both pulmonary atresia and major aortopulmonary collaterals. Furthermore, conflicting details, like when both “pulmonary hypertension” and “pulmonary arterial hypertension” are listed as eligible in separate medical areas, can easily cause confusion. Ultimately, it is up to the referral coordinator, who often lacks relevant medical experience, to interpret eligibility based on the provided information.

Referral coordinators can also consult with their chapter’s medical advisory council of four to six doctors, or more often, with employees of the national medical review team to clarify eligibility requirements or get assistance with complicated cases. At my chapter, outside consultation was used for about one of every five referrals they received, with the larger majority being reviewed by the referral coordinator alone.

I witnessed the frustration of social workers, doctors, and families when children were turned down by Make-A-Wish because of a technicality or because they fell just shy of eligibility. Although the organization publicly claims that the child’s doctor determines eligibility, the foundation alone ultimately holds this power.

One particularly upsetting case I worked on involved a child with severe epilepsy who was immediately disqualified when it was discovered that they were a victim of shaken baby syndrome; the foundation did not want to inadvertently encourage others to abuse their children for a wish.

I witnessed the frustration of social workers, doctors, and families when children were turned down by Make-A-Wish because of a technicality or because they fell just shy of eligibility.

In response to some of the widespread inconsistencies and errors, Make-A-Wish has been testing an online system that centralizes the referral and eligibility process. The new program will ask a child’s medical team to verify their diagnosis and describe their symptoms. From there, the system will automatically qualify children with predetermined conditions.

The cases that are not automatically processed, however, will be sent to a national medical review team for evaluation. With this modification, Make-A-Wish is explicitly reversing its fundamental claim that “...[t]he child’s treating physician makes the final determination [on eligibility],” completely bypassing the doctor’s opinion in favor of internal evaluation against its own criteria.

Though each Make-A-Wish chapter is advised by medical professionals, the ethical issue at the heart of the organization goes unacknowledged by its supporters: it is an inherently fraught practice to rank the severity of illness. No eligibility process will ever be able to objectively evaluate the panicked hospital visits, excruciating physical pain, crushing grief, and lived experience of the child into a fair system where one child “deserves” a wish and the other does not. Nor should it try.

I wrote many letters to applicants telling them they were ineligible for a wish. Every time I thought of how invalidating it must be to receive a notice saying you are not “sick enough” to qualify for special treatment.

Wishes generally fall into five categories: “I wish to have,” “I wish to go,” “I wish to be,” “I wish to meet,” and “I wish to give.” Because children are eligible to apply for a wish at two-and-a-half years old and often have developmental delays, it can be difficult to determine the true desire of the child. Trying to explain the concept of a wish in this unique context could sometimes result in comedy — one child I helped interview wished for a piece of milk chocolate — while others strike a more somber note, like the child who wished to never go to the hospital again. Both of them ended up taking all-inclusive trips to Disney World.

Upon qualification, a family is told of what kind of wishes are available and what kind of wishes are not allowed. Some of these restrictions include the purchase of real estate, any kind of medical expenses or equipment, in-ground swimming pools, motorized vehicles, cash gifts (shopping sprees are allowed), and U.S. citizenship.

The most notorious limitation — and one of the few controversies the organization has faced — is the restriction of hunting trips and anything involving firearms. After protests resulting from a 1996 wish in which a teenager wished to shoot a Kodiak bear, Make-A-Wish permanently halted wishes involving hunting.

Once a wish is determined, an employee known as the “wish coordinator” presents the wish to superiors for approval. With limited funds — the average wish costs $10,130 — the chapters attempt to find the most cost-effective way to fulfill a child’s wish, sometimes encouraging more practical alternatives or discouraging international travel (for example, a child who wishes to go on a ski trip in the Swiss Alps could be encouraged to consider domestic skiing options).

Depending on each family situation, the foundation also limits the participants they sponsor for travel wishes to the guardians of the child and minor siblings, often excluding adult siblings, other relatives, and stepfamily members. Above all, the wish must be medically and physically feasible and approved by the child’s doctor.

Some wish requests strike a more somber note, like the child with whom I worked who wished to never go to the hospital again.

With every wish demanding considerable labor, coordination, money, volunteers, and sponsors, it’s reasonable to ask if an organization like Make-A-Wish could instead directly target the problems many families with critically ill children face, like high medical costs, lack of access to basic resources, not knowing how to cope with their stress, and being unable to meet the needs of their child. These are necessities of their lives, but Make-A-Wish enforces an overriding instinct to ignore such structural problems in favor of a one-time materialistic gift.

This is not to say that Make-A-Wish has no benefit. Children enjoy meeting Mickey Mouse in Disney World, going on a cruise, or getting a Playstation 4, and families often value the brief respite of joy a wish can bring. The people who work for the organization are kind, often overworked and underpaid, and genuine in their efforts. It is impossible, however, for many of my former coworkers to shake off the transactional power dynamic that has defined Make-A-Wish since its inception.

The muddled concept of Make-A-Wish was brought into especially stark relief for me when I worked with immigrant families referred to the organization. Many of them had never heard of Make-A-Wish and were bewildered by the concept, sometimes thinking it was an elaborate scam. I tried my best to coherently field their concerns, but the conversations frequently ended with even more ambiguity.

I left the internship nearly a month before it was supposed to end, still struggling to answer their questions.

A.K. Pradhan is a pseudonym.